Presentation to IFA, May 30 , 2012

1. The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and TrainingThe Reitman Centre CARERS Program Joel Sadavoy MD, FRCP, Founder Geriatric Psychiatry, FCPA (Distinguished)Professor and Sam and Judy Pencer Chair in Applied General Psychiatry, University of Toronto;Head Community and Geriatric Psychiatry Services, Mount Sinai Hospital Toronto;Valeria Grofman MSW RSW Presentation to IFA, May 30 , 2012

2. Objectives To understand stress and burden of carers dealing with dementia To describe the Reitman Centre CARERS Approach To describe the CARERS Problem Solving approach To demonstrate use of simulation- videos To present the evidence for effectiveness of this approach To describe and demonstrate the CARERS suite of learning tools To describe the advocacy and policy activities To open a dialogue on addressing carer’s specific needs.

3. Is John’s Problem Common?

4. Statistics Approximately 500,000 Canadians are living with dementia including Alzheimer’s and other types of dementia Number will increase to approximately 800,000 by 2031 Unpaid caregivers provide most of the care for those living with dementia However, they have not historically been considered to be in need of or entitled to care themselves.

5. Replacement /imputed costs for unpaid carers • Can 2009 CAD $25-$26 billion (Hollander et al 2009)UK 2007 - £87 billion (Buckner and Yeandle 2007)US 2006 - US$354 billion (Gibson and Houser 2007)Aus 2005 - A$30.5 billion. (Access Economics Pty Limited 2005)

6. Family Caregivers Provide Essential Dementia Care Daily management of behaviour and safety Basic and Instrumental ADL’s Early stages: complex tasks like banking or driving Later stages: everyday functions like feeding, dressing, safety, decision making (treatment, finances, long term care) Lund, Geriatric Nursing 2005; 26: 152

7. Caregiver Burden • Physical and psychological risks of caregiving • Strongly associated with behavioural disturbances • Up to 90% of persons with dementia have significant BPSD that challenge and upset caregivers (see review by Sadavoy et al 2008) • Apathy is the commonest BPSD and impairs function (Mega 1996, Boyle et al 2003)

8. Causes of Caregiver Burden • Inadequate knowledge and skills • Lack of understanding of the disease and the management of behaviours especially aggression and depression • Practical issues • environment, finances, safety • Psychological factors • Helplessness, hopelessness, role captivity, loss of the person and relationship (dementia has been called a “de-selfing” disease), renewal of old conflicts, fear

9. A Model of Caregiver Burden Physical illness Dementia Loss of function BPSD Caregiver Burden Poor knowledge Poor health Female carer Spouse carer Isolation Guilt Anxiety Depression Shame Immature personality Poor relationship Emotion focused coping Knowledge Skills Good health Support Respite Humour Empathy Maturity Good relationship Problem solving approach • Adapted from Brodaty, International Psychogeriatrics 1996; 8 (S3): 455

10. Relief of Burden Overall, the data show that some interventions enable caregivers to enhance their knowledge, coping skills and management of care recipient behaviours which in turn decreases burden and improves quality of lifefor both caregiver and care recipient Combined Carer/Care recipient programs work best Problem-focused intervention is most effective Teaching skills to manage specific behaviours rather than offering general principles is most effective Education intervention should be directly linked to the persons problems, and focused on the practicalities of looking after them

11. The process Change Intervention Therapeutic Alliance

12. Our philosophy Comprehensively addressing the needs of caregivers is a primary and essential component of the care of individuals with dementia Contrasts with the traditional framework of intervention for dementia. Entrance point is often focal medical diagnosis of dementia Specificity

13. The Reitman Centre For Alzheimer’s Support and Training 3 Key Mandates • Comprehensive Services for Carers • Training, Collaboration, Innovation and Research • Policy and system development

14. The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training A centre for caregivers living at home with family members who have dementia: Individual and family interventions CARERS Program Access to the Outpatient Geriatric Mental Health Clinic A training Centre for professionals dealing with dementia and caregivers

15. The CARERS Program • Phase One - assessment • Phase Two: 10 week caregiver group program • Group education and problem solving technique • Skills training and simulation • Phase Three: Monthly maintenance groups for one year following the group • Concurrent arts-based group program for the person with dementia

16. Evidence-based Clinical Goals of Comprehensive Care Enhanced practical skills Improved coping/problem solving Improved emotional regulation Enhanced sense of mastery/self-efficacy Reduced depression/anxiety Improved social (marital) interaction and support Adequate professional support Acton et al, 2001; Brodaty et al, 2003; Burns et al, 2001: Gitlin et al, 2003; Kneebone et al, 2003; Pusey et al, 2000; Schultz et al, 2002; Smits, 2007; Van den Wijngaart, 2007

17. Problem-Solving Therapy (PST) • Goals: • Understand the link between current feelings and problems • Increase ability to clearly define current problems • Employ a structured way of solving problems • Increase confidence and mastery in problem solving

18. PST Rationale • Weak problem solving associated with depression and burden • Overly intense emotions contribute to poor problem solving. • Emotion-focused coping is often maladaptive. • Solution-focused coping improves control, mastery and coping capacity. Caregiving problems

19. Emotions Overwhelm Carers abilities to clearly see their problems preventing effective problem solving.

20. How do we help John? Defining the key problems with John: Having no time for himself Not knowing how to introduce help, in particular around Constant complaints on physical pain Dealing with accusations Not knowing how to respond when Judy is sad or anxious What to say and do when Judy wishes to go home

21. Seven Stages of PST • Clarify and define problems: problem list • Establish objectives and achievable goals together • Brainstorm and work out solution alternatives for each problem • Discuss pros and cons of solutions and create decision guidelines • Choose the preferred solution(s) • Discuss implementation of the solution(s) • Evaluate the outcome

22. Using the PST method Example: “I have no time for myself” Step one: Clarify: “I have no time for myself on the weekend. In the afternoon when I want to relax and read a book and just wind down, my wife gets very clingy and want my attention” step five: what solutions John has chosen: What possible options are available: Asking for more help from Judy‘s friends from church Enrolling in a weekend day program Hiring paid caregiver

23. Video Demonstration – Eric

24. Role play & Simulation: transferring knowledge to practice

25. Role play & Simulation Live face-face encounter between a carer and standardized patient (SP) Provides experiential learning Used to re-enact a situation of interpersonal challenge Can identify feelings, patterns of behaviour, and knowledge gaps

26. Common Interpersonal Challenges Accusations against the caregiver Saying no to unreasonable demands Dealing with confusion, opposition and resistance, repetitiveness, angry outbursts Moderating angry expectations of caregiver Asking for help

27. Skills Learned through Simulation Reflection rather than reaction Avoidance of the inclination to defend and use logic A focus on the other person Responding to the emotion of the other person Staying in the moment Maintaining a connection Use of non-verbal skills to communicate empathy Use of simple statements rather than questions

28. Process Scenarios acted out with simulated patient and caregiver Timeouts break the action and discussion follows after which scenario is reenacted Once comfort is achieved, the next scenario is presented. Usually 3 scenarios per group session Emotional issues and conflicts emerge and are dealt with during the group process

29. Video Demonstration – Margaret

30. Evidence shows caregivers are able to focus on their own needs when care recipients are cared for Concurrent Program For The Person With Dementia

31. Concurrent Program For The Person With Dementia What is the Program? 0ccurs simultaneously to Caregiver Group Uses creative and artistic activities Focus on cognitive and interpersonal stimulation Goals: Connect verbal/cerebral with non-verbal/embodied expression (Arts) Promote social connection for participants Utilize and focus on strengths and interests of participants and maximize personhood of ill family memeber Method: creative use of drama, movement and dance, music and sound, and story-telling exercises; photography

32. BREAK

33. The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer Support and TrainingThe Reitman Centre CARERS Program Joel Sadavoy MD, FRCP, Founder Geriatric Psychiatry, FCPA (Distinguished)Professor and Sam and Judy Pencer Chair in Applied General Psychiatry, University of Toronto;Head Community and Geriatric Psychiatry Services, Mount Sinai Hospital Toronto;Valeria Grofman MSW RSW Presentation to IFA, May 30 , 2012

34. Evidence and Evaluation The Reitman Centre CARERS Program

35. Demographic characteristics (N=61)

36. Evidence-based Clinical Goals of Comprehensive Care Enhanced practical skills Improved coping/problem solving Improved emotional regulation Enhanced sense of mastery/self-efficacy Reduced depression/anxiety Improved social (marital) interaction and support Adequate professional support Acton et al, 2001; Brodaty et al, 2003; Burns et al, 2001: Gitlin et al, 2003; Kneebone et al, 2003; Pusey et al, 2000; Schultz et al, 2002; Smits, 2007; Van den Wijngaart, 2007

37. The Reitman Centre CARERS Program: Measuring Outcomes • 8 pre/post scales each addressing a key program goal were administered: Coping / Problem Solving • Coping Inventory in Stressful Situations (CISS-A, E and T) (Endler & Parker, 1990) Emotional Regulation / Expressed Emotion • Five Minute Speech Sample (Magana et al., 1986) • Geriatric Depression Scale (Yesavage & Brink, 1983) Caregiver Burden • Short Zarit Burden Interview (Bedard et al., 2001) • Revised Memory and Behavioural Checklist (Teri et al., 1992) Mastery / Self-efficacy • Mastery (Pearlin & Schooler, 1978) • Overload (Pearlin et al., 1990) • Role Captivity (Pearlin et al., 1990) • Care-giving Competence (Pearlin et al., 1990)

38. The Reitman Centre CARERS Program: Overall findings (N=61) • Pre- and post- scores were significantly different for the following outcome measures: • Emotion-oriented stress coping (p<0.05) • Caregiving Competence (p<0.0001) • Overload (p<0.05) • Carers with more compromised baseline scores in the following constructs experienced additional statistically significant improvement in the following measures: • Depression • Task oriented coping • Mastery • Caregiving Burden

39. Carers’ Satisfaction: In their own words (N=61) • Participants were asked to fill out a satisfaction survey at the end of the 10-week CARERS program • 4 different components of the CARERS program were evaluated by 61 participants: • Clinical aspects of the program (i.e. impact on psychological functioning and skills building, knowledge base of clinicians etc.) • Setting (i.e. duration, size and make-up of the groups) • Simulation (i.e. accuracy of simulation in portraying difficult situations at home) • Overall satisfaction

40. Some Key Outcomes Almost all said the groups were important & effective - skills training changed theirbehaviour, attitudes and feelingsabout care recipient Many specific problems solved – driving, alcohol Practicing and repetitionwere among the most helpful interventions Heterogeneousgroups are acceptable Professional support and camaraderie of the group were highly valued Maintenance - 1 hour group/month

41. Reframing the Focus of Intervention Active support of caregivers is a primary and essential component of the care of individuals with dementia Contrasts with the traditional framework of intervention. Entrance point is focal medical diagnosis of dementia We propose an integrated model from the beginning that includes dementia and caregiver concurrently Implies new protocol of evaluation

42. Catalyzing Policy and System Change

43. International summit – café conversation at FICCDAT • Key questions 1. Can an evidence-based carers’ program be a catalyst to propel changes in the health and social care system? If not, why not? If so, in what ways and how does change happen? 2. What are the factors or conditions that are essential for enabling or inducing change? That is, without “x”, change will not occur • Main outcomes : • Recognize carer as a group and create a social movement • Solution oriented as a means to sustain political attention • Legal recognition of carers at a National level • Evidence base data is essential • Collaborative partnerships

44. The Reitman Centre CARERS Program: Knowledge Exchange & Program Dissemination Program Dissemination Courses for Professionals Full Reitman Centre CARERS training Specialized PST training Educational Tools for Dissemination Manuals E-Learning

45. The Reitman Centre CARERS Program: Examples of Clinical Activity and Program dissemination • LOCAL • MSH Reitman CARERS Program: 20 groups completed, 2 underway and 2 scheduled • Yee Hong Geriatric Care Centre and MSH Wellness Centre: 2 groups completed • Holy Blossom Synagogue – 1 group underway and 1 scheduled • ACROSS CANADA – Calgary, Alberta • Chinese Citizen Elder Care association: 1 group completed • Alzheimer Society, Calgary: 1 group completed • Wing Kei Nursing Home: to follow

46. The Reitman Centre CARERS Program: Educational Tools for Knowledge Exchange & Program Dissemination • Paper-based CARERS Program Manual • Comprehensive manual for health professionals to deliver CARERS Program • Includes an implementation guide translated into Chinese • Paper-based class-room presentation • Focuses on “Problem-solving Techniques” and “Simulation” • For specialized MH & complex care health professionals • Web-based e-learning program • Theories and practical applications • Interactive • Enriched with vignettes and verbal comments • User-friendly • Certification program

47. Website Demonstration http://142.223.189.191/static/carers/ http://www.mountsinai.on.ca/static/carers/?page_id=4

48. Policy and Advocacy • Identify caregivers as target population (HRSDC;MOHLTC) • Recognition of need for specific training of professionals (CCAC;Sick kids) • Development and leadership of training and education strategies (CCAC) • Integrating caregivers into dementia strategies (Provincial BSO) • Developing collaborative programs of intervention for caregivers (BSO)

49. The Reitman Centre CARERS Program: Academic ActivityUniversity of Toronto Accreditation • E-learning Modules • Face-to-face Didactic & Interactive Workshop for PST • Face-to-face three day Didactic & Interactive Workshop for the entire Reitman Centre CARERS program • Train the trainers

50. The Reitman Centre CARERS Program: Future Directions CURRENT FUTURE Reitman Centre, Mount Sinai Hospital • Community Engagement • Program Development • Health professionals & Carers Training • Evaluation & Research • Policy & Advocacy